Optimism, laughter have been key for Lawrence resident with rare form of asthma
AmyLynne Bellfi was 23 when her lungs stopped working. She had a rare form of asthma made much worse when a doctor gave her aspirin, a drug she wasn’t supposed to have.
It ravaged her lung capacity. The few steps to the bathroom became a hike. The walk to the mailbox became unthinkable. Steroid treatments eventually got her lungs working again, but led to a host of complications that left her without mobility.
And she had sons, an infant and a 3-year-old, who needed care. She and her husband, Dennis, did what they could to make it work.
They outfitted their bedroom with everything she and the boys would need while he was out working as a state trooper. They padded the sharp corners of her water bed so the boys wouldn’t hurt themselves.
Her sons would grow up, go to school and leave that room. But AmyLynne was stuck. She would spend most of the next 20 years in spots much like that: areas measuring 10 feet by 10 feet.
“It’s a conundrum of afflictions that test me, but I win every time,” she says, putting up her fists like a prize fighter. “I say, ‘Okay sepsis, what do you got? Come on.'”
AmyLynne says she doesn’t make friends; she makes family.
She and her husband have opened their home to numbers of friends who needed one. Some stayed for a few days, others for more than a year.
“My husband likes to say I collect broken people. But I think we’re all kind of puzzles waiting for all of the pieces,” she said. “There’s nothing that is going to hurt me by taking the time to listen.”
A few years ago, AmyLynne came across two strangers in a truck stop bathroom. It was a mother and daughter having the type of argument only mothers and teenage daughters seem to have.
The girl left, and the mother stood crying in front of the mirror.
“I just grabbed her, and I hugged her. I just let her weep,” AmyLynne said.
The woman apologized for crying.
“I told her, ‘Don’t ever apologize for doing a good job. If you guys didn’t butt heads, you wouldn’t be a mom.'”
Dennis jokes AmyLynne can’t go to the store without hearing someone’s story.
AmyLynne’s own children say their childhoods didn’t seem strange because they didn’t know any different. But there have been sacrifices.
Keith, now 19, has spent much of his life worrying about his mother. As a boy, he’d be playing at a friend’s house and hear a siren. He’d run home to see if an ambulance was coming for his mother. Sometimes it was.
Several months ago, AmyLynne moved into Meadowlark Estates, a new retirement community on Sixth Street. Dennis works in Nebraska during the week but stays with AmyLynne during weekends. At age 43, she is decades younger than many residents at Meadowlark, but has already made lots of new friends. She gets her meals, and she wears a button that alerts staff members if she has a problem.
That’s given Keith less reason to worry.
“She’s someone that is always in your head. Always,” Keith said. “But here, it doesn’t have to be.”
Keith was recently accepted into one of the top recording engineering programs in the country, Columbia College in Chicago.
Before Meadowlark, Keith would not have thought seriously about leaving because his mother might need him.
“This really is a magical place,” AmyLynne said.
She has also been more mobile in the past couple of years. She inherited a high-end motorized chair from a friend’s sister, who died after waiting more than a year for the chair to arrive from the manufacturer. The woman only got to use the chair for about 25 hours before going into the hospital for the last time.
“I consider her my guardian angel,” AmyLynne said.
Different kinds of happiness
AmyLynne likes to laugh. And if you make her laugh too hard, she might black out. Her blackouts only last a few seconds, not long enough to be dangerous.
It’s just another thing that comes with her diminished lung capacity. To her sons, making mom pass out is a game, and winning means you’re making mom happy.
Dennis once overheard their sons making AmyLynne laugh so hard she blacked out, came to, laughed some more, and blacked out again — for 45 minutes.
“Oh, it’s so funny,” Dennis admitted. “It’s sad, but it’s funny.”
That she can make a game out of her blackouts exemplifies her philosophy: Find joy anywhere and everywhere. She has been told at least 10 times to get her final affairs in order. Two weeks rarely go by without her making a trip to the hospital. But she says she is more fortunate than many people around the world.
Her husband is aware of how of it must sound.
“It just sounds so hokey that any one person would have that type of attitude all of the time,” Dennis said. “Nobody would believe it. But that’s her.”